Meige syndrome

What is the long-term outlook for people with Meige syndrome?

The long-term outlook (prognosis) for people with Meige syndrome is hard to predict because the specific symptoms, severity and progression of the condition vary from person to person. The prognosis likely depends on several factors, such as age of onset; rate of progression; muscles affected; how early treatment is started; and how a person responds to treatment. Some affected people improve over time.

The first symptoms of Meige syndrome may occur anywhere from about 30 to 70 years of age, but they most often occur in the sixth decade of life. Blepharospasm (dystonia of the eyelids) is the most frequent initial complaint of affected people.

In most cases, dystonia begins focally. Over time, it may spread to other muscles of the body. When dystonia spreads, it most commonly spreads to areas immediately next to affected muscles. For example, blepharospasm typically spreads to the lower face and jaw muscles. Rarely, dystonia can spread to more distant muscles in the arms and legs. The chance for dystonia to spread is thought to be highest within the first 3 years after onset. However, it can spread more than a decade later. Overall, people with initial onset of blepharospasm have at least a 50% lifetime risk of dystonia spreading.

One study found that on average, affected people show gradual worsening of involuntary movements for a little over 2 years, followed by movements slowly improving. The authors of this study suggested that factors that may contribute to a better prognosis include younger age of onset; shorter time between initial onset and progression to the worst symptoms; mild involuntary movements when the symptoms were the worst; and shorter time between onset and starting treatment.

Last updated on 05-01-20

Name: Dystonia Medical Research Foundation 1 East Wacker Drive Suite 1730
Chicago, IL, 60601-1905, United States
Phone: +1-312-755-0198 Toll Free: 1-0800-377-3978 Fax : +1-312-803-0138 Email: dystonia@dystonia-foundation.org Url: https://dystonia-foundation.org/
Name: Benign Essential Blepharospasm Research Foundation 637 North 7th Street, Suite 102 PO Box 12468
Beaumont, TX, 77726-2468, United States
Phone: 409-832-0788 Fax : 409-832-0890 Email: bebrf@blepharospasm.org Url: http://www.blepharospasm.org
Name: Cure Dystonia Now PO Box 9040
Farmingdale, NY, 11735,
Phone: +1-516-584-4156 Email: info@curedystonianow.org Url: http://www.curedystonianow.org/index
Name: Dystonia Society 89 Albert Embankment
London, SE1 7TP, United Kingdom
Phone: 020 7793 3651 (general enquiries) Email: https://www.dystonia.org.uk/contact Url: https://www.dystonia.org.uk/

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The RareGuru disease database is regularly updated using data generously provided by GARD, the United States Genetic and Rare Disease Information Center.

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